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Topic Fed up and can't see living like this forever Go to previous topic Go to next topic Go to higher level

By LouisaMay On 2013.01.20 19:27
Hi, I've been lurking on this forum for a while, and have decided finally to say something because I'm at the end of my rope. My husband was diagnosed with cancer at 38, and got very sick. Then he beat the cancer, and got PD! He can't work. Everyone admires him for his courage, etc. But they don't see what I see -- the viciousness of his temper, his jealousy of my work and my life outside the house, his suspicions that if I come home late or have to work odd hours that I'm up to no good. I've given him absolutely no reason to suspect me (I'm too tired to have an affair!) -- he's just so insecure. I'm working like a dog in a difficult industry, trying to keep things together for our boys. He wants a lot of sex (I hear this is medication related) and often complains that I don't spend enough time with him. He doesn't seem to understand how exhausted I am. We've tried counseling, but his health is so variable that he couldn't keep appointments. He goes to individual counseling now -- but the main message he seems to get from it (that I hear) is that I'm not doing enough for him. I'm so angry and wish I could kick him out, but can't because he's sick. I still love him, and he does a ton of work around the house despite his physical difficulties. But sometimes he just acts like such a jerk. I feel like my world is getting narrower and narrower, and I can't see spending the rest of my life like this. My own therapist wants me to consider divorce. But I don't know how I can do that to someone who's so sick. I'm afraid I'm going to die of stress long before he dies of PD. Anyone feel like this -- how do you cope?

By LOHENGR1N On 2013.01.20 23:45
LouisaMay, Hi and welcome to the forum. You might want to post this on the main caregiver part of the forum. Not many people visit this young onset. Awhile ago (couple of years?) Some caregivers on the main board wanted separate boards as they thought some of Us young onset were sticking our noses in their business and not answering what they wanted to hear, but that's a long story and ancient history as they themselves are no longer visiting the forum or posting. To placate the "war" the administrator created these three different forum classifications but just about everyone uses the main one again.

You might get more and better responses using that one. Again welcome.

By LouisaMay On 2013.01.21 00:58
Thanks, Lohengrin -- I've appreciated reading many of your posts.

By Liliana On 2013.01.29 02:40
I am my girlfriends post she has just me shown me she is on this forum and what she has written about us. I am am 44 and was diagnosed with PD last year. I have never really been I'll before and was stunned. I cannot even imagine what phsycological roller coaster your husband has gone through beating one illness and then getting PD. I have no answer to your dilemma but I can share what I have felt and am going through. I hope this helps, when I was diagnosed I was devasted I really felt my world had imploded. I do not want to die with no dignity a quivering shaking wreck and this played heavily on my mind. I went through sever mood swings and lost all confidence in myself both professionally and personally. As I started taking the medication I physically got better but mentally took a wrong turn. Due to lack of self esteem I became obsessed with having sex and even though I had a very happy healthy relationship I joined a dating site and started to chatting all sorts of people and then trying to follow through with random dates, if I tried to explain why I can't. I am still struggling with this problem and have really only just become self aware. I am now seeking a phsycological counsellor to help me. My partner has been through a terrible time and I am heartbroken I have caused and am causing this but I pray we can get through this together with some help.

By LOHENGR1N On 2013.01.29 08:32
Hi, and welcome to the forum. Which medicines are you on if I may ask as some of the med's can cause problems you describe. What you felt and will feel is the grieving process and throughout the disease you'll find your self going through it to varying degrees. Again welcome, ask questions we'll try to answer them and there's a great bunch of people here to help anyway we can.

By Simon007 On 2013.01.29 22:56
Hi well after seeing the posts yesterday I created my own account. So this is the boyfriend of liliana. Thanks for response My meds are siphrol and stalevo. Yesterday I went to the doctor to discuss getting some psychological help but he advised seeing the specialist again and changing the meds. Not sure if I am happy with this as everything seems to have a side effect and they need to be managed. However my doctor said he had personal experience with one of his patients on these meds who is being prosecuted for sexual offences, and they believe it was these drugs that got him into the mess, so pretty scary either way.

By LOHENGR1N On 2013.01.29 23:44
Hi and welcome again. Your siphrol is in the same class and contains the main ingredient as Mirapex a medicine notorious form causing obsessive compulsive disorders and problems with gambling, sex, shopping and everything else it seems. I don't know why Doctors keep prescribing these class of medicines as every story heard these side-effects clearly are worse than any benefit from the medication. I think the Doctor is right to hold off psychological help and change the medication. Many in the psychological field don't realize the devastating effect of the medication and may prescribe other medications that might interact with the one's you're taking or to counteract you med's effects. Not a good situation either. It sounds like the one who wants you to change medications in on top of the problem and trying to do the right correction which is a plus for you. Thanks for sharing the info and good luck with it. Glad you decided to join us here. Keep us posted and ask any questions you have we're here to help and thanks for helping others already. We need all the help we can get. Keep up the good work. Take care, best of luck and hang in there.

By Simon007 On 2013.01.30 12:18
Thanks Lohengrin you obviously very active on this site!! I will keep you all informed how it goes but I am dreading changing meds as my current meds work extremely well apart from breaking down any inhibitions I had about sexual fantasies. Fortunately none of mine are illegal but I can see the hurt I am causing my fiancÚ and clearly I cannot go on in denial. If my posts give anybody some comfort then I am truly glad. I am happy to discuss quite openly my feelings and problems so if anyone wants to ask me, feel free.

By Shaurib On 2013.02.16 16:56
I feel like my life is over; constantly rehearse in my head at nite when something wakes me, on how I can end this visual nightmare: of in visioning me jerking and hobbling at mid 50s. I was told 3 months ago I hv PD and am more scared of the meds and side effects then of someone seeing my hand tremor. My Dr subscribed ladopemine BUT I CAN'T EAT 3 full meals a day in order to take 3pills a day. And my worst problem is my depression and thots!!! I was put on Effexor antidepressant but in 2 days the corners of mouth was being pulled dwn and body jerks I didn't have before; 3 days and I got off, now more scared of all meds. All I take is .25 xanax 2times a day cus they don't react to PD. are there any GOOD stories fr use of ladopemine ?? I was told if not a full meal w ea pill u will get nausea , I hate nausea: but pharmacist gave me a LIST of horrid poss sideeffects that hv terrified me and won't take anything. Pls someone share with me med stories. Ty in advance

By LOHENGR1N On 2013.02.16 17:19
Shaurib, Hello and welcome to the forum. I looked up ladopemine and couldn't find it. So I'll guess it's Carba/levadopa or the like. You are having very normal fears just being diagnosed and not knowing what's ahead. Try to take a breath and relax. I don't know where you are from but the medicine name sounds like it isn't here in the States. We'll help you through this here as best we can on the forum. I've got Parkinson's Disease myself and I've had it a very long time I was diagnosed in 1986 just before I turned 34 years old. I'm now 60 years old. So you see your life is not over because you have Parkinson's Disease. Many medicines do have bad side=effects but just because you have PD doesn't mean you're going to be trying all those medicines or that the ones you do take will give you those side-effects. So try to relax We always envision the worse and expect the worse to happen it rarely does. Again welcome to the forum everyone here will do their best to help you along this journey. Until we talk again take care, best of luck and hang in there my "New" Friend.

By Simon007 On 2013.02.24 07:06
Dear Shaurib

What you are feeling is normal considering what we have been diagnosed with. Know that for sure you are not alone in feeling the way you do. It took over 12 months to find the right balance of meds for me physically and then I was completely normal, so this certainly can be achieved for most people. Unfortunetly I have become obsessive about certain things due to the meds and face a decision about how to deal with it. To be honest the physical results are so good I am afraid to chane them, so opposite to you but the same somehow :)

You life is definetly not over, sure you need to make some adjustments and it will take time to find the right balance of meds and lifestyle. Stick with it, be patient, and above all focus on enjoying life as now you know that you have this disease, now you know you are mortal. Everybody is mortal but we go through our younger life somehow believing we are immortal, finding we are not is a shock!!


By parisvug On 2015.09.22 01:50
Hi LouisaMay. I read your post, and I feel for you. My husband has early onset, and what a difficult road we have been on. We have gone from taking the meds to not taking the meds, to taking them again. I too have to work a lot of hours, and get a lot of grief when I am not home enough to give him attention. Our daughter is going to high school in a totally different location, another island at a boarding school (no, not a rich one, it is state funded here in alaska). The stress of her not here is driving me crazy! We are now experiencing him forgetting what meds he has already taken during the day or before bed. I wanted to create a checklist for him, but he did not want the support. He is freaking out, does a lot of his own research, and he is well versed in his disease, but sometimes I think that researching his symptoms on the internet causes more stress for him. I feel very alone, and don't know what to do. He has threatened to leave and go back to our hometown, and there are times when I think that would be a relief, but there is no way I want him gone. He is the love of my life, along with our daughter, and I just want us all to be together, no matter how bad it gets. I don't have family here where we are at for support, but have friends that help. One of my friends happens to have a husband with PD as well, although his has not progressed as fast as my husbands. Hang in there. I don't have any advice, because I'm trying to figure it out myself, but know that you are not alone in what you are feeling.

By 14100BLUE On 2016.08.29 00:25
Hello - new to this forum. Your post was from a while ago. I was wondering how you are? My husband also had PD. He is not that far along and is still working. diagnosed 2 years ago. Was recently let go from a company he basically worked for since we married. Very stressful. We sold our home and downsized for financial reasons. He as a new job now, out of state and will be commuting. I worry that his PD was to blame for the termination. His personality has changed. I wonder how many people can tell some thing is not quite right? We have not told anyone. We only recently told our 4 kids. I feel guilty for thinking the way I do. I have no one to talk to. Stress and his mood swings. We fight and bicker so much now. We hardly ever did before and his medication has made him over sexed and compulsive. I don't know how to do this long term. The future you thought you would spent together is gone and replaced with what?

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